It’s All About the Baby Steps

Posted on 04/12/2012 by Caren Rugg

It’s been about seven weeks so far since Terry’s surgery for stage 4 bladder cancer. While for almost any other procedure seven weeks would be long enough to be recovered, for this type of invasive and dramatic surgery, he’s still weeks, if not months away from complete, or at least as complete a recovery as he’s physically able. He saw the surgeon who did his surgery last week, and he confirmed he still has a way to go.

But every week is a little better for him, and this week he even managed to get on the lawn mower. He didn’t last long on his first ride, but doing it in small batches allowed him to get it all mowed on his own. While I was happy to have the grass, that never really quit growing during our mild winter mowed, I was even happier that Terry felt he could do it. For him, it was proof that he’s starting to get some strength back. Given everything he’s been through, that’s saying something. His hair is starting to come back in, and like Sampson, he seems to derive his strength from his hair. It’s a visual validation he’s getting better.

I was talking to his sister today about what full recovery may mean for him. She said she’s hopeful when it’s all said and done he’ll feel like a new man. I understand her enthusiasm, but his reality is probably going to limit just how new he feels. He has substantial damage to his heart from a massive heart attack; his thyroid is gone due to cancer; and he’s down one adrenal gland. Add in getting his abdominal cavity rearranged, and he’s been through the proverbial wringer. All things considered, it’s amazing he’s able to get out of bed every day. So every day he does gets him that much closer to whatever recovery is possible.

The doctor who oversaw the chemo had him scheduled for a three month check at which point they would do labs, scans, and chest x rays. For reasons we’re not quite sure of, the surgeon does not want to wait that long. He’s moved it up almost six weeks, which is probably not a bad thing, but it is a curious thing. I think he’s finally on board with the understanding that nothing with Terry is easily done. Either the diagnosis, the treatment, or the recovery turns out to be problematic. For now, we aren’t going to worry about it, because he sees the cardiologist and the endocrinologist before he goes back to the urologist. Getting those “gists” in at once! It would be too much to ask for good reports all the way around, but we’ll work towards that.

For now, every day he is trying to do more is to his advantage. He may not be able to be who he once was, but it’s time for him to be who he’s going to be now. That’s a challenge he’s up for, and his baby steps will get larger in getting him there.

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What a Difference a Day Makes

Posted on 10/11/2011 by Caren Rugg

I stand corrected…two days ago I was bemoaning the fact that Terry had to go to KU Med for a bladder scope after he had started treatment for a UTI with a long course of antibiotics. The urologist had already told us he felt there was little to no chance of cancer, based on the symptoms Terry was describing. Imagine his surprise, and ours, to find out there was cancer already established in his bladder.

He should have a single surgery to remove the masses in a week and a half, and they will then insert a chemotherapy into the bladder post surgery. Should it all go as planned, it will be an outpatient procedure, and I will bring him home that evening. It does appear that he will need to have his bladder scoped every three months which he’s not looking forward to much, but will do to make sure it doesn’t come back.

It was an interesting conversation afterward with the urologist. He was genuinely surprised to find a malignancy occurring when he legitimately thought cancer was not a possibility. Finding it validated why I had gotten him an appointment when 3 other doctors he’d seen had not made the referral. I understand that at first glance his symptoms belied the true origin of what they were. Thankfully, as the urologist stated, his training included doing the scope that was performed on Terry. He told me some patients cancel because they don’t like the procedure, which is understandable, but it is his responsibility to do what needs to be done, not what they’d like done. His prudence paid off where Terry is concerned.

We have every reason to believe all will turn out fine, but I can tell the continual stream of bad news health wise is taking an emotional toll on Terry. He’s never easily or quickly diagnosed, and he’s been through so much already. It’s that emotional strain on him that I worry about. He has never been good about effectively dealing with his inner turmoils, and that can and does have a negative impact on his physical health.

Yesterday was a surprise, and now after 24 hours to process I know he will get through this and we will go on to see what else comes our way. It’s an affirmation for me that I made the right decision to be at home with him. We can only live the life and make the memories we can make now. We have to be confident that everything we do now will make the future easier. For all of us. It’s the only way we can live.

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Is This Really Necessary?

Posted on 10/10/2011 by Caren Rugg

The labs came back on Terry’s blood work, and he does have a urinary tract infection that is being treated with a 90 day course of oral antibiotics. Because they identified the cause of the blood in his urine as the UTI, we were surprised to find out he is still scheduled to have his bladder scoped tomorrow afternoon. While I obviously want them to find anything that is medically wrong with him before it becomes a major health threat, I am starting to question how much is done in the name of effective diagnosis, and how much is done in an attempt to prevent liability suits from being filed.

I understand if there is a risk of cancer, given his history, that it may make them want to conclusively rule out its potential. I get that. But if they’re concerned about cancer in the bladder or urethra that would encourage them to do more comprehensive testing, why are we not aware of their concern? It’s a frustrating dance we dance of too much unnecessary or repetitive testing that they want, and not nearly enough of what we think would narrow in on his problems. Because of his Medicare and supplemental coverage, doctors are all but guaranteed to get reimbursed for their services. I don’t want to start traveling down the road of cynicism, but it’s harder all the time to consider all they do as strictly in Terry’s best interests.

When I take a step back and try to look at the situation objectively, I’m forced to admit that of all the medical events he’s been through, not one of them was easily or quickly diagnosed. From that perspective I should be glad they are doing too much if it means they stumble on to something that may truly be problematic for him. That’s how the pheochromocytoma and thyroid cancer ended up being diagnosed. As a result, I know I shouldn’t complain. Doctors have gotten lucky when we’ve needed them to be. Evidently I’m thinking skill and expertise should trump luck.

We’ll have to see where it goes tomorrow. Chances are (hopefully) that they won’t find anything. We’ve been surprised before, but maybe the surprise this time is they don’t find a problem or additional health risk to monitor and follow. It COULD happen….

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Starting the Search Again

Posted on 09/26/2011 by Caren Rugg

Terry had an appointment today with the urologist. He’s been having some blood in his urine that continues to come and go. They did labs and a urine sample, and he’ll go back in a couple of weeks to get scoped and look up into the bladder. Hopefully we’ll hear back fairly quickly on the PSA, and whether it’s elevated from last year. They’re leaning towards chronic inflammation, or prostititis as the culprit, but have to rule out the chance it’s cancer in the bladder or urethra.

Interestingly, as we waited for the doctor to come in I was reading a magazine article talking about the increasing number of patients who cannot get a conclusive diagnosis. There are approximately 23 million Americans who cannot get an accurate diagnosis of their medical problem. I know that Terry has never had a condition that was easily or quickly diagnosed, but the number 23 million seemed staggering to me.

That’s 23 million people, as well as the people around them, who are dealing with chronic health problems of an undiscovered cause. I know the frustration we’ve endured trying to get a diagnosis, or at least an idea of the cause of Terry’s vomiting. I know that when they’ve been unable to tell us what he’s experiencing, they’ve attempted to deflect their inadequacies at diagnosis by making it Terry’s fault. If they can’t figure it out, it must be because it’s psychosomatic, or all in his head. I had no idea there were so many other Americans out there dealing with the same disruptions in their lives, not knowing why something was happening to them. It’s the type of club you shouldn’t want to join.

It’s a sad commentary, in light of what health care costs are in this country, that there is such a level of substandard care. The article listed 3 reasons it’s difficult to get a diagnosis in difficult cases. One is the result of medical school training that says to look at the most common reasons for the symptoms being exhibited. It also talked about a reliance on labs and testing, and finally, the overuse of specialists. It’s easy to see how the that trio of actions can work together against the patient if it’s a rare or unusual condition. If doctors only look at what labs and testing can tell them, and if specialists only consider their discipline, it’s going to limit options. When a doctor only considers those conditions that are more common, it’s hard to get that thinking out of the box.

I’m sure there are no easy answers, but I do know that it requires extra vigilance on those who have health concerns, and those who care for them, to keep pushing until the diagnosis is made, and correct. There is no hope for effective treatment when you don’t fully understand what you’re treating.

So as we enter yet another phase of finding out what we’re dealing with, I encourage you to keep pushing when necessary, to get the answers you or someone close to you needs. We have to advocate for ourselves and the ones we love when it comes to health. There is nothing more important than your health, and nothing more worthy of your time than making it all it can be.

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Doctor, Doctor Give Me the News

Posted on 05/09/2011 by Caren Rugg

Terry had a follow up appointment with the cardiologist two days ago. Dr. Brown has been really good about seeing him more often post thyroid cancer and pheochromocytoma, so it was a chat about how things are going. It truly is hard to know how much those two separate conditions played into his overall cardiac health, so I have appreciated the additional visits with him.

It has been frustrating, however, that he has not been willing to consider how the nausea and vomiting that have occurred for almost seven years might be tied to his cardiac condition. After some discussion regarding theoretical causes, he was willing to consider a problem with either a blockage or potential limited blood flow to his intestinal system. Dr. Eck, his endocrinologist, has supported that idea with us, so we were able to secure a referral for a dye contrast scan to look at blood flow.

He gets that scan on Tuesday, the 10th of May. That gives us the opportunity to get those results to KU Med for his appointment with the GI department the following week. It was the vomiting that prompted the referral to KU Med last year, but once they found the other problems the vomiting issue went to the bottom of the heap. Discovery and treatment of the two conditions last year did not have the additional benefit of eliminating the nausea and vomiting, so we have hopes this test may yield information. There has to be a physiological cause. End of discussion. Just because they have not determined what it is yet does not mean it is not real.

All things considered, his cardiologist is pretty encouraged he’s doing as well as he is. Terry did admit to him, and had not admitted to me, that he’s noticing he’s getting winded and needing a break if he’s out in the garden or trying to work on something for 30 minutes or more. There have been several times when I felt he was breathing harder than usual, but he always minimized any concerns. Listening to him confess to the cardiologist confirmed what I’ve noticed. He’s not having much swelling to his hands or feet yet, so I hold onto that piece of good news while we have it.

While it won’t surprise me, it will be disappointing if we find out his nausea is a by product somehow of his cardiac disease. I realize everything he’s gone through has been difficult to diagnose, which I reminded Dr. Brown, but I have pushed hard on the cardiac side of things for answers for a while now, and we could not get any doctors, much less the cardiologist, to consider the connection. As long as we finally get some answers I’ll forgive him if it turns out to have a cardiac component. We just need to know.

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Does Quality of Life Matter?

Posted on 05/02/2011 by Caren Rugg

After Terry had a three day hospitalization earlier this month, we have decided it’s time to ramp up the diagnostic end of things again. The hospitalization was for the extreme vomiting, which we truly had hoped would abate in time after his surgeries last year. It has not. Apparently we are no closer to understanding this than we were in November, 2004 when it all began.

To that end we are headed back to the GI Department at KU Med next month. There’s a part of me that thinks we need a predetermined amount of time we will invest without answers, and then request the referral to Mayo Clinic. I had originally believed if we found out the problem locally it would make whatever treatment was deemed appropriate easier if it was all within the same facility. That no longer is a concern for me. I, and the rest of our family just want answers. It has impacted all of our lives for too long, and has taken too much of a toll on Terry to go through this so often. Aside from those considerations, we would just like some semblance of normalcy in our lives. With recurrent vomiting that presents the possibility every day, his, and by association, our qualities of life have suffered.

He’s awakened early each day with discomfort that leads to pain, and pain that leads to eventual nausea. Whether he ends up getting sick or not is anyone’s guess, and we never quite know until he starts feeling like he’s past it whether it will go away or lead to the uncontrollable vomiting. As a result, he’s uncomfortable riding in the car for very long, and I’m reluctant to make any more air travel arrangements for him given the uncertainty of each day’s potential for vomiting. Not much fun for him, and not much fun for me. I’d like this time I’m at home with him to be an opportunity for us to do things together and travel some while we can. We talk about traveling, and “plan” short excursions, but don’t seem to make it far from home. When it gets down to it we’re both afraid he just won’t be able to do it.

As frustrating as it is to feel like quasi hermits, it’s even more frustrating to not be understood by medical professionals. There’s a tendency by healthy individuals to gloss over notions like quality of life. When someone has faced life threatening situations, multiple times especially, it’s easy for others to think whatever life we have together should be satisfactory, because he is, after all, still with me. I understand the motivation in telling me that, but being on the receiving end of attitudes that essentially say it doesn’t matter if our lives are less than satisfactory if we are still together, feels a bit like being unvalued. I don’t care much for that attitude, and think if they could live this life for a while they would understand. They would want answers, too.

Just because doctors and specialists have not been able to diagnose his problem does not mean we should just give in and accept this way of life. Terry is still too vital a person, and we are both too young to be expected to just accept this is how life has to be for us. I refuse to, and am thankful that our primary care physician is on our side and supports what we do.

I spoke with him after Terry’s discharge, and asked about the possibility of a letter from him for Terry’s file at the hospital. When I take him in, they do not start any fluids or meds until they’ve scanned his abdomen and run labs on his blood. While I appreciate they have protocol to follow, from my perspective it’s just additional costs to Medicare that are unnecessary. We have been through this too often to not recognize the symptoms when they rear their ugly heads. I’m hopeful if they start IV fluids and anti-nausea medications faster than they have in the past, it may help end the vomiting sooner, and that would allow him to go home, rather than be admitted yet one more time. We received a copy yesterday of the letter our physician submitted to the hospital to be put in his record. It may not help, but at least it feels like getting a little bit of control.

Control is good, but answers are better. As he goes through additional testing and diagnostics, I’ll try to keep this up as a chronological record. It seems like to much to ask for, but if they can’t diagnose and treat, I hope they can at least give him tools to help cope. Whether it’s a medication or a behavioral change, he needs something. I may need something myself if he doesn’t get it!!

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Seriously???

Posted on 04/28/2010 by Caren Rugg

Aaaaaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrrrggggggggggggggggg!!! Now that I have that off my chest….

This is getting more convoluted as the process wears on. Terry met with the surgeon who is going to do his colonoscopy yesterday, and he put an entirely different spin on this than the oncologist has. It’s becoming more and more difficult to accept what we’re told because it keeps changing. I just want them to know without a doubt what we’re dealing with, so we CAN deal with it.

This is what we thought we knew: Terry has a total of three masses. One in the prostate, one in the thyroid, and the mass that started it all, in the adrenal gland. He met with the gastroenterologists last Tuesday, and they talked about the need to focus on the prostate, as the adrenal mass was determined to be non malignant. When he met with the oncologist two days later, he confirmed that the prostate was the primary concern. He would be referred to a urologist for follow up with a biopsy.

So, he met with the surgeon yesterday, and he was VERY enlightening. From HIS perspective, the immediate issue is the functioning adrenal gland tumor. While it’s not malignant, which is evidently why the oncologist wasn’t concerned, it is functioning, and may be overproducing the hormones which may have led to the thyroid mass. Lab results from blood work they did showed elevated levels of multiple hormones, so there is no question to the surgeon that the adrenal mass is functional. I’m not sure why the gastroenterologists and the oncologists didn’t catch it, but I’m thankful he did. He was able to tie things together as no one else has. The scary part, but he didn’t seem to be concerned about, is the fact that Terry may legitimately have 3 different issues going on.

He believes the prostate cancer and the thyroid cancers are not related. Meaning he does not believe the thyroid metastasized from the prostate, but is a separate cancer from the prostate. I’m not sure at this point that I find it more reassuring than not that he might have multiple cancers at the same time, as well as a malfunctioning adrenal gland. The ray of hope in all of this is that where the cancers have been located so far, the glands themselves can be removed. They can remove the prostate, the thyroid, and the adrenal gland. I would assume that potential and opportunity does not always present itself.

I want to believe we are moving in the right direction, but can’t shake the concern about the pain he’s had for so long. We’ve had lots of conversations lately, and he understands I do not want what we ultimately find to be a terminal condition for him, further reducing his life span. But I do feel it’s my responsibility as his wife to make sure they haven’t missed anything. Until they tell us they’re 100% confident they’ve located and removed all cancers, and treated anything else that can be to make him feel as comfortable as possible, I’m not willing to back off and breathe any sighs of relief. Trusting doctors has not worked very well for him in this particular situation, so until we’re officially through this situation, I remain on high alert.

This morning was the biopsy on the thyroid. In 3-5 days he should have results back. We’ll have a better idea then if the local surgeon has figured out what the other doctors and professionals have not. All we want is answers and treatment. That’s not asking for much. Is it??

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How To Be Heard…Or Die Trying

Posted on 03/31/2010 by Caren Rugg

I’ve had some time to digest the news of last week that there is a mass in Terry’s adrenal gland. The more I think about it and chew it over and over in my head the more frustrated I am with the conclusion. There’s a good chance this is malignant, and we’ll find out more after meeting with the oncologist on April 8.

The frustration stems not from knowing he may have a malignancy, but rather from the perspective that whatever is there might have been discovered sooner. Terry’s family history includes his father’s death from colon cancer, which Terry tells me started in the abdominal cavity and encroached into the colon, metastasizing there. I’ve maintained for some time that he needed a scan of some type to determine whether there was something there. Evidently, you must follow a series of other diagnostics and tests to rule other things out before you can justify doing a scan; specifically, a PET scan which can determine with a high probability whether masses are malignant or not. Terry was subjected to the same type of tests repeated at different times that never revealed anything.

I have to wonder what happens to those who don’t have advocates looking out for them and attempting to navigate the system on their behalf. Are they just routed through standard protocols until at times it is too late? The attending physician at KU Med in the Gastroenterology Dept last week looked at me as though I had a third eye when I was questioning why he wanted to subject Terry to repetitive tests that kept coming back negative. They did do a CT scan on Friday to rule out a brain tumor, so I suppose that’s thinking outside the box where recurrent vomiting and abdominal pain are concerned.

I’m not trying to borrow trouble and worry about whether it is or isn’t malignant. But if it is and he has to endure surgery, chemo, and radiation as research online suggests, I will always wonder whether it might have all been avoided. It might not be that he could have avoided it completely, but maybe it might have been discovered sooner than it was, with treatment minimized as a result. Had he not been in pain at the time of Internal Medicine Dept appointment and had an empty stomach because of the discomfort, we still might not know there was a mass.

For now I’ll focus on the fact that we know something’s there, and on April 8 we’ll have a better idea of what we’ll be dealing with to come. Until then, I’ll try not to freak every time he’s telling me about a new pain or discomfort. I’ll remind myself to keep demanding of his doctors what we think he needs. They know medicine, but I know Terry and what he’s going through. I’ll keep working to be heard, and in the process protect Terry from unnecessary tests. It’s all I can do to keep the focus on him.

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We May Be On To Something

Posted on 03/24/2010 by Caren Rugg

After beginning with the Internal Medicine Dept at KU Med Center, Terry had his first appointment with the gastroenterology side of things. Once again, we met with a third year intern, and again, he was interested and inquisitive and for the first time we felt heard.

He did have some ideas to pursue, and this is really the first time we’ve had any type of hypothesis about what’s happening. Results of the CT Scan he had at the last appointment at KU Med showed a mass in the adrenal gland. They aren’t sure what it is, and will be referring him on to possibly an endocrinologist. They will also do a CT Scan of his head to look at his sinuses, but also to look for the potential of a brain tumor. On the bright side, the doctor did say if there is a tumor, the likelihood is that it is benign. If it were malignant with as long as Terry’s had the vomiting problem, he would be dead by now. Yay…..

Additionally, they will be checking for steroid levels, specifically the hormone cortisol. There will also be a four hour stomach dumping test, and a blood test which would indicate if it is vagel nerve related. The intern spoke of potential causes for the vomiting, and concluded his conversation with us by talking about cyclical vomiting, which is not diagnosed as to the cause. They do all the tests to rule out potential causes, and when left with nothing, term it cyclical vomiting.

After feeling optimistic for the first time in a long time that we might actually be making some headway, the supervising physician began by talking about cyclical vomiting. Terry had stressed with the intern that it was primarily pain now that was the issue, and not so much the nausea and vomiting. To begin the discussion with us by talking about having a condition with an undetermined cause felt like he was following a blueprint of diagnostic tests that they all follow.

I could feel myself becoming increasingly frustrated and irritated by this physician. We explained that much of what he was recommending, Terry had already been put through. I told him we needed to do something different if we were going to figure this out. So, to a certain degree, what I was trying to avoid with repetitive testing that was always negative was what he was going to experience. If it gives us the answers we need, it will be worth it in the end, but I can tell I’m losing patience with not knowing why he goes through this. The increased pain and disclosure that they’ve found a mass in his adrenal gland is making me think that this may be something that should have been, and could have been found much sooner.

I’m hopeful that’s not the case and we’re finally on track to find out the cause of his pain and suffering. I know we’re both weary of living like this.

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The Medical Mystery Tour

Living with chronic illnesses, and the challenges they present in diagnosis, treatment, and quality of life. Come along for the ride with us!

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